Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Mac Reynolds
Thursday, December 14, 2017
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with his brother, band manager and lawyer Mac Reynolds.
If you enjoyed this episode of This AS Life Live!, you can view previous episodes as well as personal stories from other AS patients on our main Living with Spondylitis page! Want to share your story? Email firstname.lastname@example.org for more information.
Dan: Welcome to This AS Life Live. On this episode, I’m going to be interviewing my brother…
Dan: Who also happens to be the manager of our band. And we are going to be heading over to the Bunkhouse Saloon, which is a venue that our band played at, way back in the day, reminisce a little bit about the show that we played there and also talk a little AS. Come join us.
Dan: Oh wow, so not much has changed other than definitely the stage is higher than it used to be. It used to be, maybe 4 inches off the ground.
Mac: It used to be over here (pointing) too.
Dan: Yeah, it used to be on a different side. We definitely had some of our best early gigs here. These are some of my best memories, playing on the stage and maybe 100 people would show up.
Mac: If you were lucky.
Dan: So I must say, it’s good to be back to the Bunkhouse. This is a venue where we played some of our very first gigs. Um, it’s pretty famous to the locals here in Las Vegas. It’s cool to see the transformation that’s happened here, but also it still has the old kind of gritty vibe of a rock club that, that you crave as a musician, and uh….
Mac: It was a good sound system, too.
Dan: So what made you decide you wanted to manage the band? Obviously, other than, you know, being my brother?
Mac: I think I helped out with a tour poster or something, and some little things, and then just kind of either fell into it or weaseled my way into it, depending on how you want to…
Dan: No, I remember us, like, begging you to be our manager. It was the other way around.
Mac: I don’t know, I don’t know. I think it just kind of happened naturally.
Dan: I guess my first question related to AS for you is, when did you first start feeling the symptoms of AS, what age, what’s your earliest memory, what did it feel like?
Mac : I was living in England at the time and I was like a missionary at the time, and I was, like, running one night with, like, my backpack full of, like, books, to catch a bus, for like two miles, and my foot just, afterward just started hurting really bad, and that foot pain got like worse. And I saw doctors over there and didn’t really, didn’t really, kind of, they didn’t really figure anything out. They said, put inserts in your feet, or whatever. In your shoes. I couldn’t get up, and I couldn’t even walk. I couldn’t roll over in bed at night. I would spend like ten minutes trying to roll over in bed, and I’d be like just dripping sweat afterwards. I ended up finally getting referred to a rheumatologist and, you know, he did some bloodwork, he did some other tests, and like immediately it was like, yep, you have, totally have ankylosing spondylitis.
Dan: Your reaction was what? You were upset, you were happy that you got diagnosed?
Mac: It was like a mix. It was like nice to have somebody like nail it down so you have something, especially after like, you know… after the experiences I’d had. But at the same time, I was like, you know, it’s like you don’t want to be told, I’m 22, you’re 23 years old, 24, something like that, like to be told that you have like a lifelong disease is like…
Dan: And you were the first in the family, too. So when you head out on the road with the band, you’re traveling for work, what are, like, how is that, and how do you deal with having AS and kind of traveling a lot?
Mac: I mean, it’s tough. Like, you know better than anybody else. Like, one of the best things for me, like, some medication is like part of my treatment, and part of it is just like lifestyle, you know, staying as stress-free as I can, staying like as mobile as I can, trying to stay active.
Dan: So what would be your advice for other professionals who have AS and they’re trying to kind of combat that and live a, you know, still do their job…
Mac: So I have like, at the office, I use a standup desk, with like a mat on the ground. I can walk around and lower it and sit for a little while…
Dan: So you can stand, then you can sit down.
Mac: I change it up a lot. At home, when I work from home, I have four kids running around. So, like, there’s no way of sitting still for any period, any period of time.
Dan: For better or worse.
Dan: What about with parenting? What’s your advice to parents who have AS?
Mac: You’ve got to go easy on yourself and know that, like, you’re not going to be the perfect parent, you’re not going to be the perfect employee.
Dan: Have you ever thought about talking to your kids about it? Have you talked to your kids about it? Are you going to at some point?
Mac: So they’re pretty young still so I’ve never really, it’s never come up. I think I’ll probably, you know, explain it to them to some point in time, if I have to, in the future. I’m sure, it’s a part of my life, so it’ll be a part of their life.
Dan: So if you could say one thing to AS, to the face of AS, what would it be?
Mac: “Who are you?” Because, no, let me tell you why. Because it’s one of the most frustrating things about it, is like not understanding what’s going on in your body, why it’s happening. And it makes it really hard to address it.
Dan: What does living an AS-adjusted life mean to you?
Mac: It means, uh, just being very deliberate about your choices every day. Like for me, it’s just deliberately trying a little more to be healthy and balanced and, like, deliberately thinking about like, am I sitting with bad posture like this for a long time, and maybe I should sit up a little straighter.
Dan: If you could describe your AS with one word, what would it be?
Mac: I think growth. Not just like physical growth and learning how to like acclimate to it, but also just like mental, emotional, spiritual growth, like learning how to like take the experiences from it and make them something into positive about who you are as a person.
Dan: Mac, thanks for hanging, thanks for telling me your AS life story. I didn’t actually know, uh, as much as I thought I did, so it was pretty interesting to hear from your perspective, and actually sit down with you and hear kind of what you’ve been through.
Dan: Thanks for coming out and hanging at the Bunkhouse.
Mac: Thank you, Dan.
Dan: This series has been so eye opening, so inspiring to me. I have met with everybody from a yoga teacher, to a professional chef, to a student, a rheumatologist, an advocate and even my brother. I hope to be able to continue to raise awareness about AS and to bring this community together in any way possible. For more information, you can go to ThisASLife.com and I hope to see you soon. Take care.
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